Losing the will to live

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dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Losing the will to live

Postby dauofcamom » Sat Jun 16, 2018 8:20 am

My mom was diagnosed in March and had surgery April 7. She’s stage IIIC. She started her first 3-week round of Xelox regime May 16. She stopped eating and was barely drinking anything after I left to go home on June 1.

I live on the opposite coast but flew out there and stayed for 2 1/2 months to be with my mom through surgery, recovery, oncology consults and finally her first round of chemo.

On June 3 she was having intense abdominal pains and went to the ER. She stayed in the hospital for 8 days. She only wanted to sleep. She was not eating in the hospital but she was being hydrated. The doctor sent her home as all her vitals and Bloodwork were good. He felt she could get better at home since she hated being in the hospital.

Once home she still was not eating. Maybe one bite of something here or there. She was barely drinking anything either. She is incredibly weak and frail. On Thursday the onc’s office called her to come in so they could hydrate her. My brother, aunt and dad said she looked better afterward but once home, she refused to eat or drink anything. The nurse suggested an appointment with the nutritionist, but when they got home my aunt said she isn’t going. She’s not doing any more chemo or anything else the doc suggests. She just wants to sleep all day. She doesn’t want to see anyone and she won’t talk to me on the phone.

I am heartbroken and angry and scared and sad. There is nothing any of us can do to motivate her. I think my mom has lost her will to live and just wants to die.

My mom is 75 and up until her cancer diagnosis was really healthy. No medications for anything, no ailments or conditions. How can someone decline so rapidly??? I don’t know what to do.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

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mobrouser
Posts: 79
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Losing the will to live

Postby mobrouser » Sat Jun 16, 2018 10:18 am

Dauofcamom, I am so sorry.
Your questions are very difficult ones and the answers are neither easy to give or maybe even to accept.

Did your mother ever discuss, even casually, end of life options with your dad; or with you, brother and Dad at some point in the past?
If she did that should be your starting point.

Given her otherwise good health (no mets and no other health issues), and what seems to be her choice not to live, she needs to be aware that it will not likely be quick and it will not be easy for her or her family. I won't go into details here unless you wish me to, but I have experienced it. Can I suggest that you find a counsellor that will come to the house? Does her cancer centre offer that kind of support? Is there a priest or minister that can give her guidance?

Don't be afraid to ask for professional guidance/support for yourself, Dad and brother as well.

Again, I am so sorry.
:( mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Losing the will to live

Postby emkaye » Sat Jun 16, 2018 5:45 pm

I am so sorry to hear this. I was hoping that she would regain her strength and will to live.
I can only echo the previous advice that was given. I hope that she will at least listen to a chaplain or counselor.
You also need to keep your strength up. Get help for yourself so you can face what lies ahead.
I have been praying for you and will continue to pray for your entire family.
Let us know what happens we are here for you.

SteveNZ
Posts: 140
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Losing the will to live

Postby SteveNZ » Sat Jun 16, 2018 10:21 pm

I also am so sorry to here about your mum.
The wisdom others have shared is so good. Please be strong. It is a terrible burden to carry so if possible find others to share and cry with. We all care.

I will pray for you and your mum and your family.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Losing the will to live

Postby dauofcamom » Sun Jun 17, 2018 4:48 am

She is back in the hospital. She woke my dad up last night and told him she didn’t think she would make it through the night. She is so weak. I hope it’s a good sign that she woke him up and wanted to go to the hospital. Maybe she doesn’t want to die. I am flying back out tomorrow.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Losing the will to live

Postby Robino1 » Sun Jun 17, 2018 7:17 am

My prayers for you and your family during this trying time. Hopefully her will to fight kicks in.

{{{virtual hugs from afar}}}
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Losing the will to live

Postby dauofcamom » Sun Jun 17, 2018 9:28 am

Just spoke with my aunt. My mom told her last night that she is dying. My aunt asked her why she thinks that and my mom said she feels it. Changed my flight and I’m flying out tonight. I am sick, scared, sad beyond measure. My mom is the sweetest, kindest woman on the planet.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

CAGirl
Posts: 53
Joined: Fri Aug 25, 2017 4:55 pm

Re: Losing the will to live

Postby CAGirl » Sun Jun 17, 2018 2:15 pm

Oh dear.
This isn't a death sentence. Does she realize that? Especially since she was healthy prior to diagnosis. Although I am 30 years younger with two small children to live for, she can get through this and be on the other end of treatment, too! (Sorry -- I don't know much about MSI-high status. Can others here comment on that?) Have you guys seen the post here called "Stage 3 -- NED for how long now?"? That helped me tremendously. Is it the diagnosis or the Xelox that is giving her the loss of will to live? I did Folfox last year for five months and tolerated it okay with IV fluids right after and small snacks and lots of hydration (and nausea meds).
Also, have either of you read Pema Chodron's When Things Fall Apart? It really helped my outlook, changed my whole way of approaching life, actually. (And I am not religious or very spiritual by nature.) I did sound therapy and regular therapy (with my husband, with a therapist who focused on cancer and parenting) and forced myself to walk around the neighborhood, too.
Good luck -- we are here, and this Forum kicks butt. So sorry you and your family have to deal with this. I was feeling full of despair and like I was drowning before I read that book. I hope I don't have to pick it up again, but for now, I am blissfully happy (and hopeful that it won't return.)
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

nomoretacos
Posts: 50
Joined: Sun Mar 27, 2016 5:57 pm

Re: Losing the will to live

Postby nomoretacos » Mon Jun 18, 2018 5:45 am

Chemo is tough, I felt like a frail zombie by the end of it and that was the age of 31 so I can't imagine what your mother must be going through. But here I am post chemo after also a Stage3C diagnosis and I am stronger than ever and back to the normalities of life. Your mother isn't dying but with the combination of chemo and not eating i'm not surprised she feel like it. You all need to have a frank discussion with her oncologist and work out whats best for her health physically and mentally, goodluck!
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, 4 tumor deposits, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9
09/17 NED
03/18 NED

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: Losing the will to live

Postby NHMike » Mon Jun 18, 2018 6:13 am

The Stage 3 treatment regimen is very rough and it's a marathon. I've been at it for a year and it is very hard but I'm younger than your mother. I've chatted with people that have been on and off chemo for a very long time and they think about just looking for quality of life for some time instead of having to deal with it. It wasn't something that I could argue as I haven't been there. Most here are fighters but it can be hard to fight when you feel that the challenge is really hard. I talked with a co-worker about really dark things as she is gravely ill and she felt that she could talk to me about it as I've had some of those thoughts myself in the past. I am pretty sure that she's not going to take that path as she's always been a rough and tumble fighter in life.

I'm not sure what would work with your mother - maybe talking to a Stage 3 survivor directly or education about the process and the good outlook for survival. It's very hard to see your parents like this and I do hope that you and her other supporters can find a solution.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Losing the will to live

Postby dauofcamom » Mon Jun 18, 2018 9:05 am

Thank you everyone for all your words of comfort and advice. I arrived late last night and am going to see Mom this morning. She does not know I’m here yet. My brother said she has NOT lost the will to live. She’s just very sick and scared. Will be meeting with doctor and getting counseling services set up for Mom. I’ll keep you updated. Thank you immensely for your thoughts and prayers.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

User avatar
kellywin
Posts: 484
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Losing the will to live

Postby kellywin » Mon Jun 18, 2018 1:47 pm

First, I want to say I'm so sorry for what you are going through. I hope this doesn't come out wrong, but I'm not sure I'd want my mom to be on Xelox at her age. It's absolutely rough and I was 40. The thought of going through it at an older age is terrifying. The chemo is absolute hell in so many ways. The mental part of a cancer diagnosis is so hard, you have lost control of your life, cancer, doctors, poisons, tests, needles, rinse and repeat. At stage IIIC, I'm assuming they got all the cancer out at surgery, so at her age, I'm not sure I'd want to go through multiple rounds of Xelox as a precaution. Maybe Xeloda only is a better route for her. I'm definitely not a doctor (obviously) and I don't know all the specific risks for your mom, but the Oxaliplatin piece of the chemo can be really rough on younger people, and I would imagine extra hard on someone older.

Again, I hope this didn't come out wrong. I definitely feel for you and your family.

Sending positive thoughts to your mom.

...Kelly
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

Sammy2067
Posts: 13
Joined: Wed Jul 18, 2018 9:38 pm
Facebook Username: Laban Sam DeFriese

Re: Losing the will to live

Postby Sammy2067 » Wed Jul 25, 2018 9:38 pm

dauofcamom wrote:My mom was diagnosed in March and had surgery April 7. She’s stage IIIC. She started her first 3-week round of Xelox regime May 16. She stopped eating and was barely drinking anything after I left to go home on June 1.

I live on the opposite coast but flew out there and stayed for 2 1/2 months to be with my mom through surgery, recovery, oncology consults and finally her first round of chemo.

On June 3 she was having intense abdominal pains and went to the ER. She stayed in the hospital for 8 days. She only wanted to sleep. She was not eating in the hospital but she was being hydrated. The doctor sent her home as all her vitals and Bloodwork were good. He felt she could get better at home since she hated being in the hospital.

Once home she still was not eating. Maybe one bite of something here or there. She was barely drinking anything either. She is incredibly weak and frail. On Thursday the onc’s office called her to come in so they could hydrate her. My brother, aunt and dad said she looked better afterward but once home, she refused to eat or drink anything. The nurse suggested an appointment with the nutritionist, but when they got home my aunt said she isn’t going. She’s not doing any more chemo or anything else the doc suggests. She just wants to sleep all day. She doesn’t want to see anyone and she won’t talk to me on the phone.

I am heartbroken and angry and scared and sad. There is nothing any of us can do to motivate her. I think my mom has lost her will to live and just wants to die.

My mom is 75 and up until her cancer diagnosis was really healthy. No medications for anything, no ailments or conditions. How can someone decline so rapidly??? I don’t know what to do.


Is she doing Xelox for three months or six months? The ox Is the tough part of the treatment. Oral capecitabine by self is not near as bad to tolerate.
51
1-15-16 to 3-22-18: On and off Rectal Bleeding
3-22-18: CSoscopy Rectal Can
4-8-18: MRI: T3(c) N0 M0
5-4-18 Short Course RT 5 days
5-13-18: Robot Lap LAR TME
5-20-18: Nodes: 0/21 LVI: present, Perinerral Invasion: Present, All Margins: Negative
5-21-18 Stage 2a
5-25-18: Oncol discuss if Chemo needed for Stage 2a. 3 months Capox
7-01-18 Oxy cause vomiting/Nasea.
7-06-18: Oncolt discontinued Oxy
7-23-18: Xeloda Monotherapy
7-23-18: CEA post surg .5, CA19-9 2.9

Joecool1983
Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: Losing the will to live

Postby Joecool1983 » Thu Jul 26, 2018 5:13 am

Honestly, my advice would be to support her in whatever decisions she makes and help make her feel as comfortable as possible.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

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bitchslapped
Posts: 1483
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Losing the will to live

Postby bitchslapped » Thu Jul 26, 2018 12:23 pm

You sound like a wonderful daughter to your mother. I hope she is doing better & you update soon.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia


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